Just a random update

Jackson is adjusting to being back in school. This fall is particularly challenging as he adapts to a more "middle school"-type schedule changing classes each period. There are a lot of transitions for him to adjust to, but so far he's handling it. At home, I'm giving him a little more "room"; allowing him time to relax, and decompress after school. We haven't pushed the homework.

Last week, he brought home pictures from school of Super Why and the Teletubbies. He was insistent on making a book, even asked me to "get a stapler". So I quickly stapled together some notebook paper in a hastily created "book" and he went to work cutting out the characters, gluing them to the pages and writing his own "story" including his favorite characters. I was thrilled that he wanted to write, and that he stayed with the "project" for a good 15 minutes! The book is really just slapped together and I so wished I had put it together with less primitive supplies, but, I am so proud of it and will cherish it, as this was the first time he really initiated the writing.

Callahan has been trying his best to get Jax on the trampoline with him...Jax sometimes will jump with his brother, but more often answers "No!" when Cal asks him if he wants to jump. Last night, I heard Jax on the trampoline in his half singing, half yelling stimmy voice happily jumping on the trampoline. I have to say that I never expected the level of pure joy that his huge toy has brought my sons. It's a pain in the butt to move when mowing the lawn and was almost impossible to put together, but it's proven to bring hours of fun to both boys.

Today the kids had a great time at the lake with grandma & grandpa. Jackson especially enjoyed the "fast" boat ride, complete with water splashing up on the deck of the boat. Though he was at first obsessed with NOT going back to the house; insistent on staying out on the lake [definitely a moment when autism stole the joy from something for him]. Callahan caught his first fish and got to experience "driving" the boat. He was particularly proud of himself and we were proud of him too!

Faith & quiet whispers from God

Faith: a small word with big meaning.
I sometimes struggle with it; a guilt complex arises in me. Perhaps it's the devil on my shoulder whispering, "with enough faith your son would be healed from the demons of autism."
Last Sunday in church, we had a guest speaker, who eluded to just that: "the faith of a little seed can work miracles. It made the blind man see; the lame walk." It made my heart ache and my soul feel empty. Do I lack the faith to heal my son? Would he be "whole" if I prayed more? Would he be "normal" if my faith were greater? I cannot believe that to be true. Instead, I believe that God has a perfect plan for my son. A plan full or purpose and importance. The angel on my should whispers a reminder: "be still and know I am God."

And then, God steps in.
God knows when I need a reminder. He knows when my heart needs healing; He whispers to me and I know.

When I picked up Jax from school Friday afternoon I had a moment to talk to the mother of another child with autism. This child and Jackson share a gym period. Last week, the teacher was excited that the other boy used "I" with Jackson. His mother and I are getting to know each other better and Friday afternoon she was telling me how her son asked for shoes "like Jackson". Her son wanted to wear tennis shoes in gym like Jackson. She was thrilled and excited to tell me this accomplishment. [He hadn't worn "tie" shoes in years]. I was excited too. I know how "little" things can be really big things. As I left the school with Jax that afternoon, I heard whispers from God: "this is his purpose, here is his witness; be still and know I am God."

Just a gentle reminder: my son is perfect in God's eyes. His life is full of purpose. I am working on remembering that.

Lazy, Hazy Days of Summer

Our family strolled into August; we had no agenda or commitments beyond our vacation and I looked forward to a couple of weeks filled with sleeping late and pajama days. Jackson so appreciated the laid back, no agenda days, though lately he's ever so aware that the carefree days are coming to an end and school will start very soon. Though I attempted to throw in a few "when Cal goes to first grade" comments and I dragged him to the school for registration, I didn't overtly talk about school with him and yet, he seems acutely aware of the dreaded "s" word.

I start back to work tomorrow and made myself sit down here to record some of the more memorable moments of the past few weeks:
Sesame Place was amazing, it always is. Jackson was so comfortable and happy, I felt my heart growing inside me. Callahan was so patient and sweet, almost indulging his brother's love of the muppets. Cal tried for 3 days to win at one of the impossible carnival style games to get Jackson a HUGE Elmo. On our last day in the park, he managed to "win" a big Elmo for his brother. I sooo wish I'd had a camera to video him as he walked through the park to meet Dan & Jax. He held the Elmo down at his side, he didn't want anyone to think it belonged to him. He carried himself in a macho-cool style, and still he wanted to be certain Jackson knew that HE won it for him. So as Dan & Jax exited the Lazy River ride, Cal made Elmo "wave" hello to Jax. Cal proudly tells how Jackson jumped out of his tube and ran through the water to get to Cal and Elmo. It was heartwarming and a memory I'll cherish.

Another fabulous brother moment came in the time they spent on the trampoline together. During our road trip, Jackson watched Spiderman 3 several times. This renewed his love in his Spiderman costume and he would dress as red spiderman and jump on the trampoline with Callahan as the "evil" black spiderman. They would wrestle, laugh, and jump together playing "spiderman". Here are some photos of them:

Watching them play together was so fun, I'd catch myself spying on them out the window, hoping they wouldn't see. I still don't know how they could stand those costumes in the humid August heat, but I'm thankful for the memories!

The Children's Zoo is always a fun place to spend an afternoon, though sometimes with Jackson it can be trying. He can be rigid, and want to stick to his routine. We always start in Africa, with the skyride, the we check out the hyena's and lions before heading over to feed the giraffes. Last week, the giraffes weren't interested in the romaine lettuce...There were several people on the observation deck watching the giraffes, but none of them were coming our way. Well, Jackson wasn't going anywhere until he (we) fed a giraffe. The zoo worker told me to try putting the lettuce down low and maybe the baby giraffe would come over and feed. I said a quiet prayer and put my piece of lettuce down lower. Meanwhile, Jackson is yelling, "Come on giraffe, it's time to eat" and "Giraffe get over here". Thankfully, this didn't intimidate the young giraffe and she came over and ate the leafy lettuce. I've never been so happy to feed a giraffe!

The zoo also provided an arena for Jackson to learn to use his cell phone. He's had it for a year, and has no interest in phoning or texting anyone. He has learned to use the camera feature on it, taking several photos of the animals and his toys while at the zoo. It's a step in the right direction anyway...

One final summer memory, as Jackson is harassing me for his computer time. This summer Jackson was invited to a couple of co-ed parties and had a great time with his friends. He is so blessed to have an amazing group of peers who look out for him and make a point to include him. This means so much to us, and ultimately, I know it means so much to him.

Advances in Autism?

The other day as I was channel surfing in the car, I caught the end of some financial advice Dave Ramsey was giving to a family regarding a special needs trust for their child with autism. The parent was considering rolling the college fund money over into a trust. Ramsey basically said to wait to set up the trust, dump money in a more liquid account because anything could happen in the next ten years with the advances they are making in autism.

Well that one gave me pause. ???

Just last week a family member contacted me to let me know her three year old son was recently diagnosed with autism. After I caught my breath, and cried with her, I referred her to some good resources and tried to give her hope. But I also got angry and cringed: shouldn't there be more answers now? Shouldn't we have a better therapy protocol? Shouldn't services be more readily available? Shouldn't families have far more hope?

It's been nearly a decade we've been pursuing what I've now come to label "quality of life" for Jackson. Most times, I feel like we're doing a pretty good job of it. Other times I feel like there is so much more we could be doing. A simple google search yields a wealth of approaches:

restrictive diets
holistic medicines
chelation
hyperbaric chamber therapy
vision therapy
stem cell transfusions
therapy after therapy after therapy
The one thing they all have in common is cost. Don't get me wrong, I'd sell everything I've got, short of my soul to extinguish this demon. Unfortunately, there is no magic bullet, no wonder cure. Which leaves me feeling empty, though not hopeless.

Generally, I feel like we're making good choices for him; helping him be the best he can be. I do have days when the google searches haunt me and I wonder if what I'm doing is right or enough. I have other days when I am angry and frustrated; still others when I am full of hope and touched by my son's gentle spirit.

Another Milestone

Last week Jackson went to a friends birthday party. Shyenne turned 13 and had more than a dozen kids over to celebrate. It happened to be the same night of our annual family party, so I made arrangements for Jackson to go with the help of a high school friend.
At first, he was hesitant and unsure. He didn't want to go at all:
"No party. I will just stay home."
Well, I'm all about pushing his limits and having him try new things, so I pushed him. I reassured him over and over. We talked about the sequence: first mom will take you and Micheal, next you will swim at Shyenne's and sing happy birthday, then mom will pick you up. Kid you not, we went through this litany over a dozen times.
When we got in the car, we repeated this litany with Micheal still another half a dozen times until we got to the party. Once we were there, he was still unsure and needed more prompting, eventually he settled down and I drove off...with tears in my eyes. I watched in the rear view mirror as he pushed another boy into the pond off the pier.
I waited anxiously for an update: would he want to come home early? Would he be overwhelmed by everything? Would the dog freak him out [I hadn't prepared him for the dog]? Would he have a meltdown? I sent a text for an update and learned he was in his element and enjoying himself.
In the end he had a great time. He pushed more kids off the pier, ate a sufficient amount of junk food and even got used to the dog. The party gave Jackson another opportunity to grow, another chance to overcome obstacles and for this I am ever so grateful.

Summer Break

June has been such a busy month for us! Baseball, the end of the school year and family visiting. Change in routine is always hard for Jackson, though he had fun at Turtle Days and enjoyed his "Survivor" party, all of it added to the mixed up routine.
I've found myself under an unusual amount of stress lately too, and it dawned on me that I am equipt with some coping abilities that my son lacks. He isn't able to filter, prioritize or ignore like I am. With him it isn't sink or swim; it's more like tread water until someone throws me a lifejacket.

Using that frame of reference, I try to be patient and reassure him. I'd like to say I'm doing well with that, but alas, I'm not. My abilty to cope and adapt is being pushed beyond my limits, I can only imagine what it's like for him.
And this gives me even more appreciation for my son and how he approaches life. He's thrown in, and has to survive the waves. Sometimes, he adapts quickly and others, he struggles to find his way...

Outta the park!

I haven't written here yet about Jackson's "homerun". Here is the letter I wrote to the editor of the local paper (thanks momma, for suggesting I share it here!):

Dear Editor,

Jackson just finished his second season as a "bat boy" for the major boys team Egolfs IGA. A simple cheers and thank you hardly seem enough for his team mates and coaches. Doug Brown didn't hesitate to include him on the team again this year. Nick Brandt and Kevin Smallwood tolerated his "teasing" and kept him safe in the dugout. Tony Nash pitched to him in the batting cage on more than one occasion and made sure he was included in the "good game" ritual at the end of each game. All of the young men on this team showed him compassion and engaged him in the dugout and at the park. From them, he learned the fine art of spitting sunflower seeds and the "rally" cry. On any given night, Jackson couldn't wait to ride his bike to the park for a night of baseball, complete with snacks from the concession stand.

During the final game of the regular season, the coaches and players of the Sterling Water team included Jackson in the final inning--taking the field to allow him an "at bat" after a tough loss to the Egolfs team. The boys on this team gave up errors allowing a short hit up the first base line to become a homerun. The cheers from the crowd created an atmosphere charged with celebration, acceptance, and love; and brought a special kid another opportunity to be included. As parents, we are again humbled by the attitude of this amazing town we call home. It is difficult to put into words how much it means to us.

We also extend kudos and thanks to girls major coach Dan Krill and the young ladies on the Shambaugh & Sons team who included a bat girl on their team this year. These girls demonstrated that the acceptance and inclusion knows no limits.

The Youth League gave two kids experiences that will help them grow and become more confident in their everyday interactions. The rest of the world could learn a lot from this small town with a big heart!

Sincerely,

Dan & Heather Ostrowski

Nothing like life in a small town!